53 The palliative care needs of people with motor neurone disease (MND) and their informal caregivers: a time for change

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IntroductionDespite being a terminal neurodegenerative disease the role of palliative care is less recognised for MND than for conditions such as cancer. The palliative care needs of patients and carers must be understood in order to best configure policy and health care services for this population.AimTo explore the palliative care needs of adult patients and their informal carers living with MND or bereaved carers of people with MND through a systematic review of qualitative research.MethodFour electronic databases were searched (MEDLINE CINAHL PsycINFO Social Science Citation Index) using terms for MND ALS palliative care and a qualitative research filter. Included papers were data extracted and assessed for quality. The review was conducted using thematic synthesis.Results410 papers were identified and 39 included representing the experiences of 456 people with MND and 345 informal caregivers.Two sets of analytical themes were identified. The first represents the disease trajectory and specific chronological points within it. The second details three sets of influencing factors (internal external and connecting factors) that impact on people’s experiences of events along the disease trajectory. Analysing the intersections of these themes highlighted which palliative care needs are most required at each stage.ConclusionDespite being a life-limiting condition people with MND and their carers have limited awareness of or involvement with palliative care services. There are clear points in the disease trajectory where palliative care input could enhance patient and carer experience of the disease particularly at times of significant physical change.

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